Anal Camcer Survivor of 7 months

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Comments

  • vickie55
    vickie55 Member Posts: 3
    sramirez said:

    My biopsy results!
    I work in the academic area. My job position actually changed right before I had treatment. I'm now in a more relaxed setting in our central office. However, so far the work load almost seems too boring - I'm used to being active all day long at work.

    My biopsy report came back this week - all clear! The biopsy revealed scar tissue only so I'm in the clear for another few months. It was news I wasn't expecting - it really took me by surprise. I'm relieved to say the least. No more dr. appts. for 3 months. But obviously the worry never goes away.

    I also work a part-time job at a local small retail store, so that means standing on my feet. I'm just subbing right now for other staff that want time off, which is fine. My legs still get pretty tired standing for very long. I've found that is one of the problems still plauging me is my legs being weak. If I bend down I have a hard time getting up. I walk the dogs every night to strengthen my muscles, but still find my legs achy and weak.

    Thanx for your responses - it's good to know there are other ladies out there to talk to abouat our type of cancer.

    S. Ramirez

    Legs hurt all the time!!
    I am new, just joined this site and as I was reading what u posted in Nov 2008 caught my eye. No one understands when I say my legs are weak and hurt so bad. I more or less have an office job but always getting up and down from my desk. Some days I have to use to desk to pull myself up. I wonder what anal cancer and the treatments has to do with our legs hurting. I go for a colonoscopy today, I had one the year before I was DX with cancer and they only found one polyp. Do you get one every 3 years ?
  • Sandra C
    Sandra C Member Posts: 5

    Intimacy
    Thanks for the comments. It is good to know that I am "normal" in my recovery and not just being a baby. I tend to be a bit hard on myself.

    I too was diagnosed with squamous cell carcinoma of the ananl canal in January 2008, having 25 radiation treatments and a port installed for two weeks of chemo (5fu and mytocin?)The small tumor was caught very early (I noticed a consistent small groove in my stools, with no other symptoms) It was surgically removed with clean margins then I underwent rad and chemo. I was told by doing this they could assure me 99% that the cancer would not return. Got really, really sick lost all hair, about 30 lbs, and ended up in hospital with neutropenia for about 4 days. Not to mention the brutal radiation in both front and rear areas of the pelvic region which resulted in badly burned skin, infection throughout the entire time of illness, and wound management afterwards for about 3-4 months. I too had bad radiation proctitis, stil have but it is slowly diminishing, along with early menopause, terrible hot flashes, and inability to have sexual relationships because internally everything narrowed, I cannot even get an internal exam. I have been going to a physical therapist who specializes in this type of therapy, it is slowly, very slowly getting better with progressive dilation that I must do daily along with Estradiol inserted vaginally 2x's weekly. I am very thankful for early detection, but feel as if there was a lot that I did not know about as far as the effects to my body. Maybe I am an anomaly as my radiation oncologist reminded me frequently that the effects that I have had simply do not happen from the treatment that I had, even my hair falling out seemed odd to them. I complained throughout the entire treatment of terrible itching in my vaginal area, couldn't even sleep, it was terrible. Finally I had to ask for a culture in which they found an infection and further I had to ask to be referred to a wound specialist (for a large wound on my labia), a gynecologist, and ask about dilation. None of this was offered. I felt as if I was hung out to fend for myself. Also, they turned me loose following treatment completion and said only that I need to be followed by someone for five years, this was after I asked, it was not offered. Have others experinced the same?
  • waspcracker
    waspcracker Member Posts: 8

    New here
    Hi all, this is my first posting here. i was diagnosed with anal cancer last June, went thru radio/chemo in August/September at Mem Sloan Kettering in NYC. What a wonderful place, all the staff so skilled and supportive. I just had my 3 month post treatmetn exam and the surgeon found only scar tissue so I seem to be in good shape. I am hoping for a cure and to avoid the surgery. I go back for my next exam in March and it hasn't all quite sunk in yet that I might have beaten this thing. Is there anything I can do to help avoid a relapse? Treatment was pretty brutal but if it saved my life it is more than worth it. Wishing you all a very blessed holiday and a healthy new year.

    Anal Cancer - Treatment Quandry
    I was glad to read about your good experience at Sloan-Kettering. I'm in Philadelphia but may end up having a colostomy at Sloan; I'm heading there in a few weeks for a third opinion. I was also glad to read the comment about "training your colon" post-colostomy.

    I'm a 59 yr. old woman, diagnosed with Stage IIIA anal canal cancer in Sept. 2008. The original tumor was the size of a large green olive and was joined to a lymph node that was golf-ball sized. There was spread to a second lymph node (small sized) outside the colon, but no spread to the groin lymph or anywhere else.

    I completed treatment (30 days of radiation and 2 cycles of mytomycin & 5-FU) in Dec. 2008. I tolerated the treatment very well until the last week, when I ended up in the hospital for 11 days, neutropenic and with mucositis throughout my GI track, causing persistent watery diarrhea. Add to that the severe radiation burns. Ugh. All told I was out of work for 3 months during treatment. I have an extraordinary employer and tremendously work colleagues; they supported me in every way possible and carried my workload during those months. I am unspeakably grateful. My husband and friends have also been steadfast, full of humor and compassion.

    I'm now 4 months post-treatment and feeling great, other than some minor fatigue and vaginal stenosis. I'm back full-time at my demanding but stimulating job. The original tumor is gone, along with the small lymph node outside the colon. The large lymph node is down from a golf ball to a pea-sized nodule that may or may not contain some live cancer cells (the scans showed some activity, but were not definitive.) Therein lies the problem.

    I've had all the radiation possible. My medical oncologist recommends 3 more rounds of chemo to blast any possible remaining cancer in the pea-sized lymph node. I went to another medical oncologist for a second opinion since 3 more rounds sounded brutal. That oncologist said absolutely NO, the chemo could (in his words) "blow out my bone marrow." He recommended a tissue biopsy and, if live cancer cells are found, a permanent colostomy. However my surgeon refuses to do a biopsy since he thinks he'll just get fibrous tissue and won't be able to reach the suspicious area.

    Now what??? I've decided to go to Sloan-Kettering for a third opinion. I'll be seeing a colorectal surgeon and a medical oncologist. Meanwhile I'm spending days gathering all my medical records to send to Sloan-Kettering. Fortunately my employer and work colleagues remain steadfast and are pulling strings to smooth my way at Sloan.

    Has anyone else out there experienced this kind of uncertainty? Has anyone else been through Sloan-Kettering? How about colostomies? Apparently my "pea" is attached to my tailbone. If I have a colostomy the tailbone will also have to be removed or resected. Ow. I've never found anyone else who has had anal cancer. It's a relief to find this network.
  • dasspears
    dasspears Member Posts: 227
    Sandra C said:

    I too was diagnosed with squamous cell carcinoma of the ananl canal in January 2008, having 25 radiation treatments and a port installed for two weeks of chemo (5fu and mytocin?)The small tumor was caught very early (I noticed a consistent small groove in my stools, with no other symptoms) It was surgically removed with clean margins then I underwent rad and chemo. I was told by doing this they could assure me 99% that the cancer would not return. Got really, really sick lost all hair, about 30 lbs, and ended up in hospital with neutropenia for about 4 days. Not to mention the brutal radiation in both front and rear areas of the pelvic region which resulted in badly burned skin, infection throughout the entire time of illness, and wound management afterwards for about 3-4 months. I too had bad radiation proctitis, stil have but it is slowly diminishing, along with early menopause, terrible hot flashes, and inability to have sexual relationships because internally everything narrowed, I cannot even get an internal exam. I have been going to a physical therapist who specializes in this type of therapy, it is slowly, very slowly getting better with progressive dilation that I must do daily along with Estradiol inserted vaginally 2x's weekly. I am very thankful for early detection, but feel as if there was a lot that I did not know about as far as the effects to my body. Maybe I am an anomaly as my radiation oncologist reminded me frequently that the effects that I have had simply do not happen from the treatment that I had, even my hair falling out seemed odd to them. I complained throughout the entire treatment of terrible itching in my vaginal area, couldn't even sleep, it was terrible. Finally I had to ask for a culture in which they found an infection and further I had to ask to be referred to a wound specialist (for a large wound on my labia), a gynecologist, and ask about dilation. None of this was offered. I felt as if I was hung out to fend for myself. Also, they turned me loose following treatment completion and said only that I need to be followed by someone for five years, this was after I asked, it was not offered. Have others experinced the same?

    I was diagnosed with anal cancer in 11/07 - underwent 6 weeks of radiation and 2 rounds of chemo (5FU & Cisplatin). Chemo made me nauseated and I developed anemia so I had 2 transfusions plus injections of epogen. Lost my hair - had diarrhea forever (it seemed)and of course experienced the burns and damage to my vaginal and anal area. My radiation onc was very careful to list all the possible effects before we began radiation. I remember thinking at the time, who cares - let's get this going and kill the cancer! I use dilators and estraiol like you and it's getting better. I have still have issues with my digestion - I don't tolerate raw foods too well. I have to take miralax and fiber daily or I develop an anal fissure. My colorectal surgeon told me to be patient that it can take two years to fully heal so I'm just taking it a day at a time. I'm currently NED so I'm pretty happy in that regard.

    Just hang it there...
  • Sandra C
    Sandra C Member Posts: 5
    dasspears said:

    I was diagnosed with anal cancer in 11/07 - underwent 6 weeks of radiation and 2 rounds of chemo (5FU & Cisplatin). Chemo made me nauseated and I developed anemia so I had 2 transfusions plus injections of epogen. Lost my hair - had diarrhea forever (it seemed)and of course experienced the burns and damage to my vaginal and anal area. My radiation onc was very careful to list all the possible effects before we began radiation. I remember thinking at the time, who cares - let's get this going and kill the cancer! I use dilators and estraiol like you and it's getting better. I have still have issues with my digestion - I don't tolerate raw foods too well. I have to take miralax and fiber daily or I develop an anal fissure. My colorectal surgeon told me to be patient that it can take two years to fully heal so I'm just taking it a day at a time. I'm currently NED so I'm pretty happy in that regard.

    Just hang it there...

    Thanks for the encouragement
    Thanks for the encouragement and sharing your info. I too am very thankful to have the cancer gone. I continue to be patient about the healing, it is a very slow process but I can see a progressive healing.
  • harleyrider
    harleyrider Member Posts: 6

    Anal Cancer - Treatment Quandry
    I was glad to read about your good experience at Sloan-Kettering. I'm in Philadelphia but may end up having a colostomy at Sloan; I'm heading there in a few weeks for a third opinion. I was also glad to read the comment about "training your colon" post-colostomy.

    I'm a 59 yr. old woman, diagnosed with Stage IIIA anal canal cancer in Sept. 2008. The original tumor was the size of a large green olive and was joined to a lymph node that was golf-ball sized. There was spread to a second lymph node (small sized) outside the colon, but no spread to the groin lymph or anywhere else.

    I completed treatment (30 days of radiation and 2 cycles of mytomycin & 5-FU) in Dec. 2008. I tolerated the treatment very well until the last week, when I ended up in the hospital for 11 days, neutropenic and with mucositis throughout my GI track, causing persistent watery diarrhea. Add to that the severe radiation burns. Ugh. All told I was out of work for 3 months during treatment. I have an extraordinary employer and tremendously work colleagues; they supported me in every way possible and carried my workload during those months. I am unspeakably grateful. My husband and friends have also been steadfast, full of humor and compassion.

    I'm now 4 months post-treatment and feeling great, other than some minor fatigue and vaginal stenosis. I'm back full-time at my demanding but stimulating job. The original tumor is gone, along with the small lymph node outside the colon. The large lymph node is down from a golf ball to a pea-sized nodule that may or may not contain some live cancer cells (the scans showed some activity, but were not definitive.) Therein lies the problem.

    I've had all the radiation possible. My medical oncologist recommends 3 more rounds of chemo to blast any possible remaining cancer in the pea-sized lymph node. I went to another medical oncologist for a second opinion since 3 more rounds sounded brutal. That oncologist said absolutely NO, the chemo could (in his words) "blow out my bone marrow." He recommended a tissue biopsy and, if live cancer cells are found, a permanent colostomy. However my surgeon refuses to do a biopsy since he thinks he'll just get fibrous tissue and won't be able to reach the suspicious area.

    Now what??? I've decided to go to Sloan-Kettering for a third opinion. I'll be seeing a colorectal surgeon and a medical oncologist. Meanwhile I'm spending days gathering all my medical records to send to Sloan-Kettering. Fortunately my employer and work colleagues remain steadfast and are pulling strings to smooth my way at Sloan.

    Has anyone else out there experienced this kind of uncertainty? Has anyone else been through Sloan-Kettering? How about colostomies? Apparently my "pea" is attached to my tailbone. If I have a colostomy the tailbone will also have to be removed or resected. Ow. I've never found anyone else who has had anal cancer. It's a relief to find this network.

    The uncertainty is the
    The uncertainty is the hardest part. However, aggressive is my middle name - I certainly wouldn't wait long to decide what to do - be informed - get the opinions but the bottom line is you have to destroy the cells somehow. If it grows it spreads.

    Never been to Sloan but if they say resect - resect they are the top of the food chain. Give yourself every chance possible. Good luck and keep us posted!
  • zjrosenthal
    zjrosenthal Member Posts: 43
    Sandra C said:

    Thanks for the encouragement
    Thanks for the encouragement and sharing your info. I too am very thankful to have the cancer gone. I continue to be patient about the healing, it is a very slow process but I can see a progressive healing.

    Havent been here for awhile but I am still healing and so far, thank God no reoccurance. I also am using dialator 2x a week, estogen cream and vagifem tablets. I am also using a moisturizer called Liquibeads 2x a week and that is helping. Other than some fear about HPV relations with hubby are getting better and less irritating. I still have some bowel incontinence.
  • lisavaughan
    lisavaughan Member Posts: 7
    Stage 3 Squamous Cell Anal Cancer
    Had a tennis ball size tumor in my anus. Immediately had surgery for a colostomy. Told it would be removed in three months following my treatment. Had 42 rounds of radiation and carried a mobile bag of chemo for five consecutive days for three times during the two and 1/2 months of treatment. Scar tissue so bad I was told my colostomy would be with me forever. Scar tissue damaged my vagina so bad I can never have sex again. At 39 years old this was devastating news. The radiation also destroyed my cervix. It put me in menopause and I now have severe osteoporosis. Caused gangrene in my upper intestines and my colon. Had surgery to remove part of both.

    Three years later (diagnosed in May, 2006) and I'm cancer free but not without some consequences. I feel great otherwise. I could tell you things that would curl your toes. Because my tumor was so big they went after it aggressively and I paid the price with my body. My skin all over is still dry. I have another appointment of June 4th, 2009 with my oncologist....wish me luck.

    Remember....squamous cell anal cancer rarely comes back. Compared to non-hodgkins disease. Very curable even in late stages unless it metastasizes. We're going to be okay.
  • lisavaughan
    lisavaughan Member Posts: 7
    Sandra C said:

    I too was diagnosed with squamous cell carcinoma of the ananl canal in January 2008, having 25 radiation treatments and a port installed for two weeks of chemo (5fu and mytocin?)The small tumor was caught very early (I noticed a consistent small groove in my stools, with no other symptoms) It was surgically removed with clean margins then I underwent rad and chemo. I was told by doing this they could assure me 99% that the cancer would not return. Got really, really sick lost all hair, about 30 lbs, and ended up in hospital with neutropenia for about 4 days. Not to mention the brutal radiation in both front and rear areas of the pelvic region which resulted in badly burned skin, infection throughout the entire time of illness, and wound management afterwards for about 3-4 months. I too had bad radiation proctitis, stil have but it is slowly diminishing, along with early menopause, terrible hot flashes, and inability to have sexual relationships because internally everything narrowed, I cannot even get an internal exam. I have been going to a physical therapist who specializes in this type of therapy, it is slowly, very slowly getting better with progressive dilation that I must do daily along with Estradiol inserted vaginally 2x's weekly. I am very thankful for early detection, but feel as if there was a lot that I did not know about as far as the effects to my body. Maybe I am an anomaly as my radiation oncologist reminded me frequently that the effects that I have had simply do not happen from the treatment that I had, even my hair falling out seemed odd to them. I complained throughout the entire treatment of terrible itching in my vaginal area, couldn't even sleep, it was terrible. Finally I had to ask for a culture in which they found an infection and further I had to ask to be referred to a wound specialist (for a large wound on my labia), a gynecologist, and ask about dilation. None of this was offered. I felt as if I was hung out to fend for myself. Also, they turned me loose following treatment completion and said only that I need to be followed by someone for five years, this was after I asked, it was not offered. Have others experinced the same?

    Anal squamous cell cancer (Stage 3)
    Wow....are you lucky. I was diagnosed with a tumor the size of a tennis ball in my anus. No metastasized. They went after it aggressively with 42 rounds of radiation and 3 rounds of chemo (portable chemo bag worn for 5 consecutive days). Biopsies under anesthesia every two months for two years; couldn't find any cancer. To make a long story short...scar tissue so bad my colostomy is now permanent. Anus/rectum is damaged beyond repair. Damaged my vagina and the scar tissue narrowed it closed. At 39 years old I'll never have sex again. Put me in menopause and I was recently diagnosed with severe osteoporosis as a result of the radiation. Three years later I'm cancer free. My skin is still dry beyond belief but otherwise I feel great. Besides the colostomy, the only surgery I had was to remove part of my upper intestines and part of my colon which resulted in an ileostomy. Ileostomy was reversed and they reattached the colostomy. The radiation melted the loop together and caused a blockage which resulted in gangrene. Almost killed me. Spent 4 months in the hospital b/c I couldn't absorb nutrients and the dehydration caused kidney failure as well as heart failure. I almost starved to death even with optimental running constantly thru my nose feeding tube. At 5' 2" I weighed 83 lbs. I just recently had a colonoscopy thru my colostomy and additional biopsies of my anus/rectum. All looked good.

    Three years later I now weigh 113 lbs. My life has been changed dramatically but I'm alive and feeling pretty damn good....considering. How did my gyno miss it each year. I didn't really start experiencing any pain until 6 months prior to my diagnosis. I slipped on the bathroom floor and just thought I bruised my tailbone. My husband started noticing an unusual tightness in my vagina while having sex and credited himself. It wasn't until he notice my appearance did I finally go get checked out.
  • dasspears
    dasspears Member Posts: 227

    Stage 3 Squamous Cell Anal Cancer
    Had a tennis ball size tumor in my anus. Immediately had surgery for a colostomy. Told it would be removed in three months following my treatment. Had 42 rounds of radiation and carried a mobile bag of chemo for five consecutive days for three times during the two and 1/2 months of treatment. Scar tissue so bad I was told my colostomy would be with me forever. Scar tissue damaged my vagina so bad I can never have sex again. At 39 years old this was devastating news. The radiation also destroyed my cervix. It put me in menopause and I now have severe osteoporosis. Caused gangrene in my upper intestines and my colon. Had surgery to remove part of both.

    Three years later (diagnosed in May, 2006) and I'm cancer free but not without some consequences. I feel great otherwise. I could tell you things that would curl your toes. Because my tumor was so big they went after it aggressively and I paid the price with my body. My skin all over is still dry. I have another appointment of June 4th, 2009 with my oncologist....wish me luck.

    Remember....squamous cell anal cancer rarely comes back. Compared to non-hodgkins disease. Very curable even in late stages unless it metastasizes. We're going to be okay.

    Radiation damage...
    Ah, so your ob-gyn missed yours too? Mine told me it was "probably" a hemorrhoid and when it began bleeding even more, I went to a colorectal surgeon. Mine was not tennis ball size but still had to be removed. Only damage is to my vagina because of the radiation. I'm using dilators and estrogen cream to try and re-strech that area. Have made improvements but then I got a urinary tract infection.

    I am 16 months out of treatment and my next appt is 6/5. I'll be thinking of you!
  • zjrosenthal
    zjrosenthal Member Posts: 43
    dasspears said:

    Radiation damage...
    Ah, so your ob-gyn missed yours too? Mine told me it was "probably" a hemorrhoid and when it began bleeding even more, I went to a colorectal surgeon. Mine was not tennis ball size but still had to be removed. Only damage is to my vagina because of the radiation. I'm using dilators and estrogen cream to try and re-strech that area. Have made improvements but then I got a urinary tract infection.

    I am 16 months out of treatment and my next appt is 6/5. I'll be thinking of you!

    Post treatment
    From what I have been reading here, I am doing remarkably well. I had stage 2-3 anal cancer and was treated last fall at Mem Sloan Kettering. They were wonderful and are still following me for the next few years. The last "big exam" by the surgeon showed only scar tissue thank God and I havent got another appointment until July. I feel for you ladies that have such permanent damage. I too wonder why my GYN didn't pick this up sooner as I am very diligent about getting my yearly exams. I guess since this is a rare cancer they dont usually think of it. My dialator, lubricants, moisturizers and estrogen cream seem to be keeping me fairly good and though the treatment (radio and chemo) were brutal, I am grateful for the result. Some bowel incontinence seems to be the only lasting side effect.
  • dasspears
    dasspears Member Posts: 227

    Post treatment
    From what I have been reading here, I am doing remarkably well. I had stage 2-3 anal cancer and was treated last fall at Mem Sloan Kettering. They were wonderful and are still following me for the next few years. The last "big exam" by the surgeon showed only scar tissue thank God and I havent got another appointment until July. I feel for you ladies that have such permanent damage. I too wonder why my GYN didn't pick this up sooner as I am very diligent about getting my yearly exams. I guess since this is a rare cancer they dont usually think of it. My dialator, lubricants, moisturizers and estrogen cream seem to be keeping me fairly good and though the treatment (radio and chemo) were brutal, I am grateful for the result. Some bowel incontinence seems to be the only lasting side effect.

    Lubricant
    I noticed you are using Liquibeadsx2. Is that silicone based? I just bought a silicone based lubricant because someone told me it might work better than water based. What are your thoughts?

    Thank you,
  • zjrosenthal
    zjrosenthal Member Posts: 43
    dasspears said:

    Lubricant
    I noticed you are using Liquibeadsx2. Is that silicone based? I just bought a silicone based lubricant because someone told me it might work better than water based. What are your thoughts?

    Thank you,

    Liquibeads
    Yes they are silicone based and are considered a moisturizer rather than a lubricant. Replens is another moisturizer not silicone based. These differ from the water based lubricants as they stay longer somewhat like using hand lotion on chapped external skin.
  • dasspears
    dasspears Member Posts: 227

    Liquibeads
    Yes they are silicone based and are considered a moisturizer rather than a lubricant. Replens is another moisturizer not silicone based. These differ from the water based lubricants as they stay longer somewhat like using hand lotion on chapped external skin.

    Thanks for the info....
    I just bought some and I like it much better!
  • zjrosenthal
    zjrosenthal Member Posts: 43
    Lubricants again
    Moisturizers such as liquibeads and replens are used to keep the inside of the vagina and the outer tissues from drying and chapping. Lubricants like KY jelly are more for use during insertion of dialators and for intercourse. They are water based and short term. My doctor also told me that many of her patients have had success using vitamin E capsules. They are to be pierced with a needle to release the contents and inserted into the vagina and are much less costly than the moisturizers. Please remove the needle before inserting! I guess it is best to see what works for you by trial and error.
  • ACW189
    ACW189 Member Posts: 24
    vickie55 said:

    Legs hurt all the time!!
    I am new, just joined this site and as I was reading what u posted in Nov 2008 caught my eye. No one understands when I say my legs are weak and hurt so bad. I more or less have an office job but always getting up and down from my desk. Some days I have to use to desk to pull myself up. I wonder what anal cancer and the treatments has to do with our legs hurting. I go for a colonoscopy today, I had one the year before I was DX with cancer and they only found one polyp. Do you get one every 3 years ?

    Legs hurt all the time
    I completed treatments in May 2009. It's now almost 8 weeks post treatment and I too have much leg pain. It seems to be more muscular though and extends from my calves all the way up through the hips. My medical oncologist would like to wait for the results of my first post treatment CT scan just to be sure there's no joint/bone issues as sometimes very small fractures can occur. If all is clear he will prescribe physical therapy to help stretch the muscles which he suspects have atrophied from radiation and long periods of inactivity. I do try yoga stretches in the morning -- help somewhat.
  • dlorente11
    dlorente11 Member Posts: 3

    Anal Cancer - Treatment Quandry
    I was glad to read about your good experience at Sloan-Kettering. I'm in Philadelphia but may end up having a colostomy at Sloan; I'm heading there in a few weeks for a third opinion. I was also glad to read the comment about "training your colon" post-colostomy.

    I'm a 59 yr. old woman, diagnosed with Stage IIIA anal canal cancer in Sept. 2008. The original tumor was the size of a large green olive and was joined to a lymph node that was golf-ball sized. There was spread to a second lymph node (small sized) outside the colon, but no spread to the groin lymph or anywhere else.

    I completed treatment (30 days of radiation and 2 cycles of mytomycin & 5-FU) in Dec. 2008. I tolerated the treatment very well until the last week, when I ended up in the hospital for 11 days, neutropenic and with mucositis throughout my GI track, causing persistent watery diarrhea. Add to that the severe radiation burns. Ugh. All told I was out of work for 3 months during treatment. I have an extraordinary employer and tremendously work colleagues; they supported me in every way possible and carried my workload during those months. I am unspeakably grateful. My husband and friends have also been steadfast, full of humor and compassion.

    I'm now 4 months post-treatment and feeling great, other than some minor fatigue and vaginal stenosis. I'm back full-time at my demanding but stimulating job. The original tumor is gone, along with the small lymph node outside the colon. The large lymph node is down from a golf ball to a pea-sized nodule that may or may not contain some live cancer cells (the scans showed some activity, but were not definitive.) Therein lies the problem.

    I've had all the radiation possible. My medical oncologist recommends 3 more rounds of chemo to blast any possible remaining cancer in the pea-sized lymph node. I went to another medical oncologist for a second opinion since 3 more rounds sounded brutal. That oncologist said absolutely NO, the chemo could (in his words) "blow out my bone marrow." He recommended a tissue biopsy and, if live cancer cells are found, a permanent colostomy. However my surgeon refuses to do a biopsy since he thinks he'll just get fibrous tissue and won't be able to reach the suspicious area.

    Now what??? I've decided to go to Sloan-Kettering for a third opinion. I'll be seeing a colorectal surgeon and a medical oncologist. Meanwhile I'm spending days gathering all my medical records to send to Sloan-Kettering. Fortunately my employer and work colleagues remain steadfast and are pulling strings to smooth my way at Sloan.

    Has anyone else out there experienced this kind of uncertainty? Has anyone else been through Sloan-Kettering? How about colostomies? Apparently my "pea" is attached to my tailbone. If I have a colostomy the tailbone will also have to be removed or resected. Ow. I've never found anyone else who has had anal cancer. It's a relief to find this network.

    Quandry = Answer?
    It is now 2 months later...............hope you found your answer. Please post how and what happened.
    I was somewhat confursed by the Doctors waiting on my treatment. My diagnosis is 4th stage anal cancer complicated with a large 14 cm pelvic tumor (reduced by aspiration June 15 '09. After completing the first round of standard radiation & chemo..............the pelvic tumor had to be addressed. The Dr. had a specialist pull 12 oz. of liquid out by needle/cat scan guided surgery. The tumor is reduced but still in my pelvis. I went to the trouble of obtaining a second opinion from a surgeon who recommended going in and possibly removing all organs...........pelvic exoneration "gutting" and then my flesh wound might not heal.......................BE VERY RESPONSIBLE FOR YOUR OWN BODY...........Seek many opinions....this Dr. was so different than my existing surgeon who will go in with a scope first to tell what the tumor is adhereing to and what will be involved in removal. Two totally different approaches............if I choose the gutting Dr. I probably would not live and if so, life would be miserable. Please let me know what you chose.
    Best Regards,
    Denise
  • Lady J
    Lady J Member Posts: 1
    Sandra C said:

    I too was diagnosed with squamous cell carcinoma of the ananl canal in January 2008, having 25 radiation treatments and a port installed for two weeks of chemo (5fu and mytocin?)The small tumor was caught very early (I noticed a consistent small groove in my stools, with no other symptoms) It was surgically removed with clean margins then I underwent rad and chemo. I was told by doing this they could assure me 99% that the cancer would not return. Got really, really sick lost all hair, about 30 lbs, and ended up in hospital with neutropenia for about 4 days. Not to mention the brutal radiation in both front and rear areas of the pelvic region which resulted in badly burned skin, infection throughout the entire time of illness, and wound management afterwards for about 3-4 months. I too had bad radiation proctitis, stil have but it is slowly diminishing, along with early menopause, terrible hot flashes, and inability to have sexual relationships because internally everything narrowed, I cannot even get an internal exam. I have been going to a physical therapist who specializes in this type of therapy, it is slowly, very slowly getting better with progressive dilation that I must do daily along with Estradiol inserted vaginally 2x's weekly. I am very thankful for early detection, but feel as if there was a lot that I did not know about as far as the effects to my body. Maybe I am an anomaly as my radiation oncologist reminded me frequently that the effects that I have had simply do not happen from the treatment that I had, even my hair falling out seemed odd to them. I complained throughout the entire treatment of terrible itching in my vaginal area, couldn't even sleep, it was terrible. Finally I had to ask for a culture in which they found an infection and further I had to ask to be referred to a wound specialist (for a large wound on my labia), a gynecologist, and ask about dilation. None of this was offered. I felt as if I was hung out to fend for myself. Also, they turned me loose following treatment completion and said only that I need to be followed by someone for five years, this was after I asked, it was not offered. Have others experinced the same?

    I noticed this was an April posting. I just joined today. I completed my treatment (2 rounds of Chemo and 25 rounds of Radiation) in July of 2008. I experienced much of the same as what I see shared here. I am currently scheduled to have vaginal reconstruction surgery to help rebuild the walls of my vagina as well as to remove scar tissue deep within the vaginal cavity. The way the doctor explained it, he will inject estrogen to help thicken the walls, then he will input a dilator that will remain for about two weeks. He will then provide me with a removable dilator that I will need to insert and remove routinely. Has anyone under gone this surgical procedure and can you tell me what to expect? I know there may already be posts out there with this information, if so would you point me in the right direction.
  • radarbaby
    radarbaby Member Posts: 8
    vickie55 said:

    Legs hurt all the time!!
    I am new, just joined this site and as I was reading what u posted in Nov 2008 caught my eye. No one understands when I say my legs are weak and hurt so bad. I more or less have an office job but always getting up and down from my desk. Some days I have to use to desk to pull myself up. I wonder what anal cancer and the treatments has to do with our legs hurting. I go for a colonoscopy today, I had one the year before I was DX with cancer and they only found one polyp. Do you get one every 3 years ?

    Vickie55 & ACW189 Leg pain
    I am 5+ years out of treatment for anal cancer. So far, so good. I remember that leg pain. I have fibromyalgia but it was different. At about 4 months post, I began doing stretches and walking to get my strength and flexibility back. Start gently and keep at it and it will eventually get better.
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